My 9-Year-Old Had Alice in Wonderland Syndrome—This Is What We Experienced

One night, I tucked my very sick son into bed, and he looked up at me with a confused expression. "You look teeny tiny, mom—like you shrunk," he told me. Since he had a fever, I chalked it up to that, and assured him he'd feel better in the morning. But the next day, it happened again—this time with a much lower fever. 

I took him to the pediatrician, where he tested positive for the flu. I wondered if the virus might be affecting his brain. Once we got home, I did some research and I learned what Alice in Wonderland Syndrome (AIWS) is.

What Is Alice in Wonderland Syndrome?

Alice in Wonderland Syndrome is a neurological condition in which the brain's ability to process sensory input is disrupted. It alters a person's visual perception and can even distort their sense of reality. In most cases, it's temporary. The good news is, it isn't something harmful on its own. 

The syndrome, aptly named after Lewis Carroll's famous children's story, is considered rare. However, this could be because research is limited, and many cases likely go unreported or are misunderstood. Experts say it is commonly written off as being a vision problem or even a hallucination—but it is neither.

Instead, Anjan Chatterjee, MD, a cognitive neurologist and founding director of the Penn Center for Neuroaesthetics, describes AIWS as a "sensory distortion.” He explains that it often presents as either micropsia, where objects appear smaller than they are, or macropsia, where objects seem larger than they are.

MaryAnn Mays, MD, a neurologist specializing in headache medicine at the Cleveland Clinic, says some reports indicate AIWS can also cause other distortions, such as objects in a room appearing flat (two-dimensional) or the room seeming tilted. Some people even report a sense of time distortion, with time either speeding up or slowing down.

“There can also be a sense of depersonalization during an episode, where a person might feel like they are looking down at themselves as though they are detached from their body,” Dr. Mays continues. 

My Family’s Experience With AIWS

When my 9-year-old son began experiencing AIWS, he explained that, out of nowhere, the room around him would seem to shrink. After he tested positive for the flu, these visual distortions became more frequent.

A few days later, I was talking to my friend Jaime, whose son—also 9 and just recovering from the flu—had experienced some strange visual distortions while he was sick. He had told his mom the bedroom door looked miles away even though it was right in front of him. I was intrigued that our seemingly unique experience had also happened in a different household just down the road. Of course, I was also concerned, until I learned it was likely AIWS.

While it was alarming to witness my son experience episodes of AIWS, he was never overly scared himself. These episodes lasted for several minutes at a time, which Dr. Chatterjee says is pretty typical. They also persisted throughout the duration of his recovery, even lingering as other symptoms, like his fever, subsided.

At his sickest, he experienced episodes several times a day. Eventually, they started to taper off slowly, until they were gone entirely.

Alice in Wonderland Syndrome Causes

Experts don't know exactly what triggers AIWS, but some possible causes include:

• Migraines
• Epilepsy
• Viral infections like the flu or Epstein-Barr, which can lead to encephalitis
• Medications, which AIWS as a possible side effect

In rare cases, AIWS might also be the result of something more serious, like a brain tumor—though that would typically be accompanied by other tumor-related symptoms, such as difficulty walking or speaking.

Dr. Mays advises families to consult a health care provider anytime you observe your child experiencing an onset of unusual symptoms to determine the cause. Furthermore, she cautions parents not to mistake the mental changes that accompany a very high fever for AIWS, as the former might require hospitalization. But if a fever is well-controlled and there are no emergency symptoms, AIWS itself does not require immediate attention.

Alice in Wonderland Syndrome Treatment

"Parents should know there is no treatment for AIWS other than to treat what is causing it in the first place," says Dr. Chatterjee. For instance, this could mean treating a seizure, a migraine, or in my son's case, letting the flu run its course. I kept up with pain medication, helped keep him hydrated, and encouraged him to rest.

“If AIWS is being caused by a migraine, parents should know that many migraine medicines we have available do appear to be helpful in preventing these visual processing disturbances,” adds Dr. Mays.

Furthermore, people who experience AIWS might be prompted to take a trip to the eye doctor, but Dr. Chatterjee says the syndrome is not actually vision related.

"When AIWS occurs, an ophthalmologist would see nothing wrong with the patient's retina because this is not related to vision, but instead to the higher order regions of the brain that actually help us put together the objects that we see in front of us," explains Dr. Chatterjee. "This is why we assume it has something to do with the brain's processing of visual input that is being interrupted."

Why We Need More Awareness For AIWS

There needs to be more awareness of this condition as it may help prevent a misdiagnosis. "It's very important to distinguish episodes of AIWS from hallucinations, which have other associations, like schizophrenia," says Dr. Chatterjee. "This is not a condition in the category of mental illness."

Anecdotally speaking, fears over an improper diagnosis of hallucinations or a mental health condition might even prevent some patients (or their parents) from reporting episodes of AIWS. Which is likely a reason it remains under-discussed, even in the medical community.

"It's difficult to say whether it's truly rare or if it's just not being reported as often as it occurs," Dr. Chatterjee says. "It's quite possible kids or their parents just don't bring it up."

What To Do if Your Kid Has AIWS

Dr. Chatterjee advises parents to remain calm and provide their child with reassurance as these episodes are not harmful even though they can be unnerving. However, parents should make a point to document what is going on.

“Listen to as much of a description as your child can share with you so that you can relay that information to their provider,” says Dr. Mays. “Ask them to describe what they are experiencing and make note of the time and any other symptoms they might have.” 

It’s also critical not to dismiss any symptoms that could be a sign of something more serious. When my son spoke to me of his AIWS symptoms, I took steps to find out what was wrong—even though everything about my son's experience pointed toward it being due to the flu. After all, he had never had these episodes before and he did test positive for the virus right when the symptoms began.

However, Dr. Chatterjee says that, in some cases, further testing could be warranted if these episodes persist with no explanation—or if they are accompanied by other symptoms. It's always worth checking with a doctor and finding out whether further testing, including an electroencephalogram (EEG) or magnetic resonance imaging (MRI), might be warranted.